The truth is, no class can make you a writer. No seminar can, either. No guru. No text. They can inspire you to do better, but they cannot make you a writer.
Okay, maybe knowing Aristotle's poetics can help. Maybe reading "Save the Cat" taught me some things.
But what really improves writing... is thinking about doing it, and then doing it. Over, and over, and over.
How do I know this?
Because I cannot look back at any particular class or seminar I've ever taken and say, "Wow, that really took my writing to the next level." No. The repetition of writing, and the study of other things I like (and why I like them), and then more writing... these things have improved my writing. Period.
A word about being on a "creative journey": this is a nonsense phrase, and I reject it, entirely. This is a phrase somebody make up to sell you something. You're not on a journey. There is no end-of-the-rainbow. If you're writing, you're on a life-long slog. It's not a race, or a marathon, because again, those things have an end. When you're a writer, The End is when you die.
If writing comes flowing out of you, ideas come kicking and screaming out of you, and you can't stop them from coming, and they come out insisting for an audience in the larger world... then you are a writer.
If you think you might 'try it out' for a while and 'see what happens' and then 'move on to something else' if it 'doesn't work out'... NO. Just, no. I'm sorry, but you are not a writer. You are wasting your time, and you should probably go find something else to do with your time. Like bungie jumping. Or gardening. Or helping out at your local soup kitchen.
Because frankly it take a long time to get going. It takes a long, long time of writing into the void before 'something happens'. You cannot know this, of course, until you get going, and you see how impossibly long of a slog it is! So I'm writing this to save you some valuable time. Like people always say to actors, "If you can imagine yourself doing anything else... go do it." It's like that.
BUT.... if you spend weeks hating yourself because you can't seem to sit down and put any of your thoughts down, or you haven't had a decent idea in weeks and you're tempted to drown this hateful sorrow in a bottle of Jameson... then you are a writer. A frustrated one, perhaps, but a writer, nonetheless. If you can go whole years without a great idea, and then have a great idea, and then execute it... you are a writer.
If you spend time practicing when you're not inspired -- writing dumb stuff like blog posts and perfectly crafted work emails, in-between bursts of lucid creativity -- that also makes you a writer. If you spend days, also, procrastinating about this practicing, but then eventually you do sit down to practice, that also makes you a writer.
Basically, if the primary goal of your brain is to make things out of words, things that yesterday did not exist, and you are sullen and frustrated when you're not doing that... then you are a writer. If the primary goal of your brain is to 'work on something that will make me rich and famous like J.K. Rowling' ... stop. Just stop, and go into hedge funds.
And it doesn't matter if you write every day, or not. I used to; now, not so much. I'm still productive, all the same. What actually matters is that you can't stop thinking about it, and when you're not doing it you wish you were doing it, and that then eventually you do find time to do it. And there must always be some writing - and editing- that happens whether or not you feel inspired. And those things must happen without perfection. Especially once you've begun something, but the bloom of inspiration is off the rose; you must finish it. Otherwise, what are you doing?
Lots of writers wonder: how do you find the time? If you're not independently wealthy, and you have a job and kids and shit? You just do. You dig it up; you unearth it. You beg, borrow and steal that time. You turn off the internet, or go someplace where you don't know the wifi password and it's not written on the wall. And then you make something with that time. Not another angry FB post addressed to someone you don't know, not a meme (unless that's your thang), not giving up to go make the beds or do the dishes; but making a real THING with words that wan't there before you began.
Do not let anyone tell you that there is a such thing as a "creative journey". That phrase is an empty platitude meant to sell you something (a seminar, or a book), and it means nothing. There is no field of wildflowers for you to go running through as your stories come effortlessly forth from a magical fairy pen; that is bullshit. There is no beginning, middle, or end of this process, like there is on a hero's journey. It's not a journey because it never ends. Or, forgive me, it ends when you die.
"But what about when I get an agent?"
"But what about when I sell my first thing?"
"But what about when I win my first Emmy?"
"Isn't that the 'end' of my creative journey?"
No. NO. Unless somehow miraculously your words dry up after you win that Emmy, and all you want to do is sit in a rocking chair and pet cats or dogs from then on, NO. There is no end to it. It is not a hero's journey. You write hero's journeys, but as a writer, you do not live them.
Look. Writing is like living on a rollercoaster you can't get off of, and you didn't choose to get onto, in the first place. Most of the rollercoaster is that flat, boring part. And nobody's going to stop it, and let you off. So you ride through the flat, boring part, over and over and over... but if you can sit down at a computer, or with a pen and paper, when you're at the crest of the enormous hill, the almost-falling part, and write, when you're afraid and shaking, begging to be released, a childish, crying mess... then you've got something. And then, you also have to write when you're on that flat, boring part, too. And edit while you're down there, too. You have to learn to do both. Because if you only doing one, and not the other, your audience can tell. It's inside the writing, and they won't want to read it if you haven't written during both, during the whole ride, and during the next one that's coming, and the next, and the next.
And here's another "perk": If you're doing it right, if you are creating stories with an aim towards giving people purpose and hope, you must be able to see that MAYBE there might not be a point to life, in the first place. You are instilling people with purpose and hope. Which means they might not have it, to begin with. And they might not have it, because there might not be any inherent purpose, to life. Which means, as a writer, you sometimes will walk around knowing in your bones that none of it matters. This, friends, is a heavy burden, and if you can walk away now and do something else, go do it. Because walking around trying to instill hope and purpose is tough enough, without knowing, deep down, if there is a purpose? Oy. That's a dichotomy that's hard to live with.
Look. If there is a Kingdom of God, and I automatically get to go there when I die because I didn't murder or rape anybody, I'll beg to be forgiven for the sin of not thinking that life was all about getting to Heaven. And then I'll probably be forgiven, because that seems Godly. Though, I think that probably this isn't the way it works. At all. The way it probably works is that tiny nugget of hope inside me that clings to the childish idea that there is a heaven, is the heaven I'm thinking of. That the tiny piece of me that still writes to instill hope and purpose, despite that nagging feeling that it's all for nothing, that feeling is God. And the only way to live in the Kingdom of God is to live in it, now, when there is energy in my veins and stories in my heart. And the only way to live in that Kingdom of God forever, is to live in it NOW, so strongly, and use my gifts so vehemently, that my energy becomes immortal. And when the ashes of my body are spread out over the Pacific Ocean, the fish will take a nibble, and the man who catches and eats that fish will get a taste, and hope and purpose will be in the fish, and the man, and the ocean, and my life's work will be more than just words on the page, but the work of life and living that never ends.
For the past couple years, I've had lots of irons in the fire. I've won some awards for my writing, I've written short film scripts, teleplays, stage plays, screenplays, and an entire novel. I've written for blogs and created text for published books, and I now have a manager shopping around one of my TV projects (EVOLUTION). And I haven't stopped creating, for longer than a few days at a stretch; in fact, a new TV project (TWIRL) is up for a spot at Table Read My Screenplay at Sundance. Right now, I'm gearing up to write a short film with a director-friend of mine, to be shot in 2018; amazingly, funding is already in place.
But, in many ways, I am still nowhere. I have yet to turn any of these 'irons' into ... whatever blacksmiths make. Horse shoes? Axes? All of the things that iron can be made into. I've made nothing, contributed nothing to the national conversation. I'm still in the shop, pounding away, sweating profusely, with "nothing" to show for it.
It begs the question... why do I keep doing this?
Much like every other human being I've ever met, I feel certain at times that no one cares about what I have to say, or what I think is cool, yet I keep writing and talking, anyways. I feel lonely, so I reach out with words in an effort to connect. I'm afraid of embarrassing myself, but equally afraid to be boring, or plain, or obscure. And I'm constantly asking myself, Why? Why do I feel like telling stories, in the first place? Why do I have characters and situations rolling though my brain, all day long? Isn't that crazy? And how come I keep subjecting myself to disappointment? I've been writing seriously for the better part of a decade, and I'm still not making my living from all of this. What on earth makes me keep going?
The answer, for any of you who might be struggling with the same, is... I have no idea. I have no idea why I keep going. I enjoy the characters in my head; is that so wrong? I feel a deep sense that I'm not 'seen' in our media, so I push characters out there who I relate to; isn't that what writers (and other artists and creators) do? I feel a sense of duty to talk bout the things I think are real, and true, (spiritually) in this life... is there really any difference between me, and a priest, a rabbit, or a guru? (Those guys aren't considered crazy; yet... I mean... they are totally believing in something no one can explain, or prove!) Spielberg and Abrams, they aren't crazy. So, neither am I. I'm in the game, but still on the verge. Maybe I'll always be on the verge? Sure, that's a risk. It continues to feel like a tightrope walk. But stopping doesn't feel like something I could do, either. So, I soldier on. Stopping, at this point, would feel like defeat. Which, frankly, scares me more than the reality: that while I may fall down, falling down means I'm in the arena, which means I can always get back up again, and keep fighting. (BTW, here's a great Medium piece on fear of failure, and why it keeps most people from having what they truly want.)
Every beginner creates with a healthy balance of self-doubt, inner drive, enthusiasm, and resolve. You'd think that established creators simply drop the self-doubt piece, but from what I've heard, some do, but some don't. So for an intermediate like myself, the question isn't about why I keep doing it, or should I keep doing it. At this point, it's simply a question of stamina. Do I have the stamina to keep creating, until something comes of it?
At this stage, friends, I gotta tell you: it's day-to-day. But I still feel I'm the most myself when I'm reaching out with my feelings, and words. When I'm engaged, and trying to be heard, seen and understood. When I'm trying to connect.
Perhaps nothing ever has to come from any of this... so long as I'm doing my best to connect. To reaching out with my feelings, and saying, "Don't you feel like this, too?"
You know what? I'm bored with this shit. Being a good person, BS. It's just so ... dull!
Yeah, I hink I'monna start acting like DT and HW and BC, over here. Just, go up to people and start grabbin 'em by their privates, demanding sex, tellin' em how good lookin' they are while in the next breath how I'll ruin their careers and lives if they tell anyone how I acted, then maybe rape a handful of 'em, just to prove I can. And I'll be very rich and very powerful, so I'll be able to buy off anybody who wants to tell the public. It'll be awesome. It'll be an awesome cycle of conquest and power, conquest and power, and more conquests and more power.
Course... in some tiny corner of my brain, I will be silently weeping for the young child - one born with goodness, love, beauty, and promise - I once was. Because now, this is all I can do. This is what I am, now: my whole life is assault and cover-up, assault and cover-up, assault and cover-up. And, deep down, I know this means that I am a criminal. I do not belong in society. I belong in prison, probably in solitary confinement. I should be stoned by my victims, and I know it. None of the people around me could ever dream of being as disgusting and terrible and hateful and small as I am; and if they really knew how I was inside, and if they did not need me for something (money, power) ...they would turn their backs on me, and shun me forever.
But after dozens and dozens of victims, I am so small, by this point, in my own mind so insignificant, so full of nothing, that I *must* continue to seek out victims because it temporarily shuts off that part of my mind that tells me that I am nothing. And most other people don't hate themselves like I do, they can't imagine living as I do, that anyone would, or could... and so they are trusting. So it won't be hard to find one after another, after another; each one will present themselves to me like a lamb at the doors of the slaughterhouse.
And, sure, each victim comes with a potential price tag. But I can afford it. So there I remain, trapped inside my own worthlessness and nothingness, forever, because now that tiny corner of my mind (where I used to simply weep for the small child I once was, full of promise and dignity) has become Trump Tower-sized, Weinstein Company-sized, and Cosby Show-ized. And now inside there, I no longer even have any pity for that small child. I hate that child, too; for it was me, but is no longer. I killed it. And it's too late to go back; there is no mythical offspring who will take off my mask, and tell me I am loved, and beg me to come back from the darkness. The light inside is as faint a memory as the dodo, or the horse-and-buggy, or the rotary phone. I have spiraled down inside my own dark loathing so far, I can no longer even remember what it felt to be a human being. I have destroyed my own consciousness, the one and only gift that makes me not like an orangutan, or a cockroach. I have destroyed my human-ness, obliterated my whole self, and I have no nameable emotions except a never-ending cycle of panic and rage. For I know that, without money and power, I am nothing to those around me, and I am completely and utterly alone.
Which is what I feared -- and felt, deep down -- all along. That I am disgusting and horrible and hateful and unlovable, and that I will forever live in a cage, because that's the only place I belong. A child's nightmare, self-taught, made real. I am a self-fulfilling prophesy. My mind is a prison of it's own making, and if I could pray, if I believed in an all-knowing being outside myself who would lower themselves so much as to even listen to any of my prayers, I would pray for the sweet release of death.
This Day in Autistic Homeschooling:
Took the morning off to go pick up our new bike. Favorite color n' everything.
Took it to the park, getting the hang of it... feelin' good!
On the way home, we stop at alleys and crosswalks (like a BOSS), because (and I quote) "We don't wanna get in an accident with THIS baby!
We talk about what to name the bike. Feel like maybe bike is our new best (inanimate) friend.
50 feet from home, we wipe out... good feeling, gone.
...now we HATE the bike, as we feel it has betrayed us.
Avery, reviewing my bedside reading last night:
own a BOOK!!!!
about how to
Today was really good day. It was the kind of day you want to tell your best friend all about, just like when you were in high school, and you just got that really cute boy to look back at you... but you and your friend have different classes all afternoon, so you end up writing her a really long note (that you're going to pass her, later) instead of paying attention in Algebra... because you just can't wait to tell her all about it.
So buckle up. I'm writing you a note. And here's me, passing it to you in the hallway...
So, first of all: I got up ON TIME. I know. Even though it snowed overnight (wha?!) and honestly I felt like I could have stayed in bed til NOON... I didn't, I got up, and I made the coffee, and then I did my Qigong (like, the whole thing, even the foot-thing, the one I hate and sometimes skip).
And while I was doing my Qigong (and drinking my coffee), Warren did Math class with Avery. LOVE IT. Then I grabbed some breakfast (the Dragon's Way Special: green juice and cashews), made Avery some breakfast, and then Rowan came over for our usual Monday morning classes. They played, and worked on Art and Science, all while I wrote!
By Noon, I was almost finished with the main narrative of the book, so I did a little happy dance on my way downstairs. And then, drum roll please... after I fed Avery lunch, I sat down and finished the rest of the book. It's just the first draft, but it's DONE. It's all in one place, all (or most of) my ideas, down, on paper. Literally, too, not just metaphorically, because I printed it all out (for editing purposes; not because I hate trees).
Yes, it's done. And yes, it's a thing to celebrate. I've always wanted to write a book, ever since I fell in love with Romancing the Stone as a kid. In fact, I wanted to be a writer, largely because of that stupid movie. Because it looked like so much fun to be (pre-Columbian-drug-lord-kidnapped-my-sister) Joan Wilder, blubbering away and forgetting to buy toilet paper. I always wanted to know how it felt to neglect your personal hygiene for weeks, until finally you type out those final words -- "The End" -- and then feed your cat some tuna fish, pop open a bottle of wine, and celebrate by throwing the dishes into the fireplace. This is the livin'!
But it was only 1PM, and we didn't have any tuna fish. So instead I just threw some clothes in the washing machine... which, shit, I just realized, I forgot all about them.
But that's part of what made today so awesome! Because not everything got done, except the most important parts.
Anyways, in the afternoon Avery worked on his comic book for Language Arts, and we talked about what to do when you get stuck with your plot (duh, make something bad happen to the protagonist, of course!), followed by a lesson on Vikings for Social Studies. And all afternoon he did great during his lessons, and was a great listener and a great worker, and I just love having him home on days like this, when he's a little mini-me, writing his book while I write mine...
Then he played while I did some jobby-job work, and then I took him to swimming class, and while he swam (which wasn't 100% awesome b/c the substitute swim teacher was sorta mean to him, but he did basically OK) I started reading said book... and I realized that it honestly doesn't suck. At least the first 40 pages are OK.
Then after swimming, I took him out to dinner at the Golden Nugget because we had no food in the house for dinner. And it was very delicious, and only $21 plus tip because he ate off the kid's menu. Then we hopped on the bus, got home quickly, and he ran downstairs to watch TV, which was awesome because it gave me a chance to finish binge-watching Season 2 of "LOVE" on Netflix. SCORE. Then Warren came home, and the boys hung out, and then I hung out with Warren for a bit, and now I'm getting Avery ready for bed. Kind of ...because he sorta does it all by himself, now. Because he's almost 10.
And I'm exhausted... but I'm also happy. Everybody did what everybody needed to do today, but... I didn't have to do it ALL. I did PLENTY, but not everything.
And, yeah, sure, Avery's going to bed a tiny bit late. And no, I didn't get much jobby-job work done, but there's always tomorrow, and none of it was urgent. Except my book. Today, my book was the "work" that had to get done; it wasn't going to wait to be finished, anymore. I was going to sit down and complete the main arc, and write THE END.
So... that's what happened, and there you go. Sometimes your creative life actually, more or less, comes first.
I'm off to bed. Thanks for reading this really super long note, friend. I hope Mrs. B didn't catch you reading it and take it away. Because ...it was just a really good day, and I felt like sharing it with you.
by Cara Winter
Inspired by the play MISTER FUGUE, by Liliane Atlan
Fugue State (definition): "... a rare psychiatric disorder characterized by reversible amnesia for personal identity, including the memories, personality, and other identifying characteristics of individuality." ~ Wikipedia
LIGHTS UP ON:
The Make America Great Again Detention Centers of America (Now Great Again)
a desert outside Las Vegas, NV in the not-too-distant future
The Detention Center is empty, save for four children who have been hiding in the sewers and surrounding desert. They have been on their own for so long, they are now like wild animals in almost every way, except they are human children:
SARAI (a different brown)
OLIVIA (sort of white but not really)
A man (BEN, white, 30-45) walks into view. He is carrying a Nintendo 3DS, and a brown paper sack.
Another man (JOHN, white, 25-30) in a uniform enters behind him, tapping him on the shoulder. They whisper to each other.
BEN: John, I told you to fucking stay out of sight!
JOHN: Yeah, dude, but I forgot to give you this.
John hands him a gun, concealed in a bag.
BEN: A gun?! They’re kids; I won’t need this.
JOHN: Dude, their parents were illegals, Muslims, blacks… you can never be too careful.
Ben takes the gun.
BEN: Fine, Jesus Christ. Now get lost, alright?
Ben sits down on an overturned garbage can, and begins to play his Nintendo, with the volume all the way up. After a few moments, we see a child’s head (JUAN) popping up out of a nearby sewer cover. Ben pretends not to notice it, absent-mindedly grabs a potato chip out of the bag with one hand, trying to beat the game with only one hand. Juan approaches him.
JUAN: You’ve gotta keep both hands on that thing. You gotta, you're gonna miss the-- you've gotta catch those, dude, and you're running out of power, so -- watch out! Watch out, you're gonna ---
The game 'bleep-bleeps' indicating Ben has lost.
JUAN: --lose. Moron.
Ben glances at Juan, and then puts both hands back on the Nintendo. He plays again, more feverishly, and Juan becomes involved in the outcome, jumping up and down, pumping his fist, etc.
Two other children (KEVIN and OLIVIA) emerge from their hiding places, drawn by the sounds of the game, and/or the food.
KEVIN: Can I see? Lemmie see.
OLIVIA: There are no grownups. Should be no grownups. Only kids. Grownups hung and shot, fucking hung and shot, or just raped and shot and then taken away. Or just taken away, maybe raped there. Wait, is there food in there?
Olivia peers into the bag beside Ben.
OLIVIA: Chips! O.M.G., shit, can I have some?
Ben nods absent-mindedly. Olivia begins to eat as though she's never seen food before.
KEVIN: Lemmie have some!
Kevin grabs the bag away; Olivia and Kevin fight over the food.
Ben has now allowed Juan to play his Nintendo. The children are in heaven.
Finally, SARAI emerges. She wears a tattered headscarf; she is the most elder of the children.
SARAI: Stop! All of you! Olivia! Kevin! Juan! Go back to into hiding, you idiots, this could be a trap!
From out of nowhere, John and a second soldier (DAVID) grab the children, pointing guns at them. Ben also grabs one of the children, and brandishes his gun.
DAVID: Hands up, kids. You’re illegal and you're coming with us.
This play is derivative of a copyrrighted work by the late playwright Liliane Atlan. Please email me directly if you are interested in staging this play, so that we may discuss rights & fees with the copyright holder of the original piece.
The ancient Greeks invented it.
They got everybody in town together, sat them down, (yes, plied them with alcohol) and told stories. The people listened, their hearts rising and falling with the joys and sorrows of the hero's. And in that act, in the act of empathizing, the people believed they were able (only in this sacred place, and only together) to communicate with God. By attending, by listening, and by communally giving their response back to the Gods, they were experiencing a great mystery.
This place was not a church or a temple. It was a theater.
My church is the theater.
If you do not believe that a theater is a church, that's fine. But those who do ask that you respect it as such. For, to me, to us, it is a sacred space.
Would you go into another man's church, and stand up in the middle of a sermon, and heckle a priest? Would you? Even if they believed all sorts of odd things you'd never even heard of; I mean, WOULD YOU?
I have been to friend's churches and temples and synagogues. I do not always believe everything I hear or see, in these places. But I don't heckle. I certainly don't snicker, or cross my arms over my chest shaking my head in disbelief. I listen, and I am respectful, and (while I'm there, I might as well) see if I can find a message inside that speaks to me. I mainly do this, though, not for myself, but for others. Yes, for those believers around me... because they are there to experience the Divine, in their own way, in whatever form that takes for them. I don't want to trample all over that; for that is sacred, too. Worship, in any form, is sacred.
Plus it's just rude, and bad manners, to disrespect someone in their place of worship. It's ... well, even the most common men and women understand that; don't they?
The theater is my church. It is my temple. It is where I worship the great Mystery. It is not a talk show, or a sitcom; the theater is a place for the communication of empathy, and a place for communication with the great beyond.
So if you can't at least be respectful whilst inside my church... you shouldn't be allowed inside it.
Which is why, if while inside you disrespect this place, this temple, this church, of mine... you will promptly be shown the door.
A friend recently asked me how I stay inspired to write every day. What keeps my creative mind humming?
The answer is... I have no idea. I don't possess one of those always-inspired, manic brains that simply churns out gem after gem. I have something altogether different.
For me, as a writer, there are two types of days:
Type 1: Ideas come to me, and I feel that they need to play themselves out, through me. These are 'portal' days, where I'm listening to the messages from the great beyond. And they push me into the chair. These are the good days. But they're rare.
Much more common, 98% of the time, it's:
Type 2: I started something yesterday in a fit of creative clarity, but now I don't feel 'inspired'; in fact I'm fairly grumpy, or anxious, or I didn't sleep well, or I have a thousand other things competing for my attention. But I must resume working on it, because that is the only way it will ever be finished. And if I never finish it, I will float down into a spiral of self-loathing and inner cruelty, and wind up alone, herding cats, and calling them my babies. So I push me into the chair.
In other words, I am a hostage to the creative process. Type 1 days lure me in. Type 2 days keep me in bondage.
But I'm lucky. Because there are 3 things that make me perfectly situated to writing:
1. I love making shit up; always have. Writing is an outlet for what would otherwise be known as Pathological Lying... which is kinda nice.
2. I'm prone to a bit of self-loathing. But writing, as it turns out, is the antidote. By writing, I have a real, live, concrete way of 'fighting' those feelings of worthlessness, or smallness, or whatever it is. Writing is my weapon. I keep the demons at bay... by feeling productive.
3. I grew up with three fastidious, Type A people, and at some point they converted me (mostly).I hate a cluttered living room, or not knowing exactly (to the penny) how much money I have. I'm exacting. I want it to be perfect. I have high standards. This is really, really helpful when writing (and editing). There's always something more to do to the stuff I created on that Type 1 day, because it has to be perfect.
On Type 2 days, all 3 of these things help. They assist in the arduous process of applying butt-to-chair.
So ... that's a long answer to the short question of 'how to be creative or inspired every day': I'm not. For me, it's about capitalizing on that 1 day per month where I feel inspired, and then reminding myself how awful I'll feel if I don't apply my fingers to the keyboard on the other 29.
Late last year, our son Avery was diagnosed with Autism Spectrum Disorder.
This did not shock us, other than hearing the actual words being said out loud. No, we knew; he’d been showing various ASD symptoms and behaviors for a few years, and having recently added stimming (pinching his fingers in front of his face while talking) to his long list of quirks, we knew he’d probably have his ADHD diagnosis ‘upgraded’. He has all too many hallmarks of a high-functioning kid on the Spectrum: terribly rigid, too literal, limited interests, social interaction issues, and more. It was clear; we finally had our diagnosis of ASD.
Fast-forward to a month ago: September 12, 2016, the date that (for my family) will live in infamy! (Or, whatever the opposite of infamy is!) We drove down to Des Moines, Iowa to see Dr. Kavalier of Kavalier & Associates, recommended by an old friend of Warren’s. Dr. Kavalier had been using an off-label Alzheimer’s medication on kids (and adults) with ASD for over a decade with remarkable success, so we decided to meet with him.
I was nervous, on two fronts: Part of my feared he’d looked at Avery and say, “Oh, this won’t work for him, he’s too high-functioning”. Another part of me feared he’d fit the profile, but the medication just wouldn’t work.
Neither fear came to fruition.
Dr. Kavalier took Avery’s medical history from us, and observed him as he stimmed quietly, in his chair, and withdrew into his imagination. Then Dr. Kavalier began telling us stories of thousands of patients (literally, over 3,000, to date), 99% of whom had been turned around by this medication called “Namenda” (generic: Memantine Hydrochloride). He told us of non-verbal Autistic kids who suddenly spoke to their parents after being on it for three days. He told us about one, formerly non-verbal patient who waltzed into his office after being on the medication for three weeks, looked him in the eye and exclaimed, “Dr. Kavalier, I’m the smartest one in my class!” Example after example, kid after kid, just like ours. We started to think, “What if this could help Avery?”
We told Dr. Kavalier we wanted to try it.
Three days after Dose #1, when we called Avery upstairs to dinner, he didn’t whine or refuse. Instead, for the first time in recorded history, he replied, “Okay, but first let me put away my toys!” The next day on the way to school, he started a spontaneous discussion with me about whether Dolphins or Humans were smarter; he heard my reasoning, and contributed his own thoughts, in a fully organic, real-live, give-and-take conversation. That afternoon, he addressed a friend’s mom by looking her in the eye and asking his question (no stimming, pacing, or searching for words).
In two weeks’ time, he was starting to turn things around at school, and was more easily engaged in the classroom assignments. He stopped having explosive emotional outbursts when plans changed, or when asked to transition. He began engaging in conversations (both at home, and at school) outside his narrow range of interests, and stopped withdrawing into his imagination so much.
One month in, Avery’s getting A’s and B’s on assignments he’d have gotten F’s on before (because he thought them too ‘boring’ to attempt). No more outbursts, no more disruptions in class, no more refusing to do things, and for the first time seems genuinely engaged in school, and enthusiastic about what he’s learning. Obsessive thoughts/ speech patterns, stimming, and withdrawing from reality have all been reduced by around 85-95%. We are still playing with his dose, and there is still room for improvement (the stimming, some social anxiety)… but the gains we’ve seen make us feel like shouting it from the rooftops:
This stuff is a miracle drug.
This could be a cure for ASD.
This shit WORKS.
Dr. Kavalier tells us there are no side-effects (and we haven’t seen any, either), and there is no reason a person can’t be on Namenda for an extended period of time. His patients who have been on Namenda for 10+ years all are pictures of health. It is unknown if children who have taken Namenda until their 20’s will be able to be weaned off, but he suspects it’s possible. We’ll know in the next few years; that formerly non-verbal little girl who proclaimed she was the smartest one in her class? She’s just started college, and she told us she wants to be a Pediatric Oncologist.
Now… I could get into all the reasons why this medication isn’t FDA approved for kids ... a) few medications actually are, b) now that it’s generic, the companies don’t see any financial incentive for it; c) whatever, life sucks. And just search the interwebs; plenty of people (and the FDA!) warn of the "dangers" of off-label prescribing. However, given the strength of Dr. Kavalier’s own data and experiences, and given our own friend’s daughter’s miraculous recovery… we felt it was a risk worth taking. For, as Dr. Kavalier said of Avery, “Look, if he doesn’t go on the medication, he’ll be okay. He’ll grow up and probably go work with computers; he’ll work in IT, but he won’t interact with people unless someone needs help with their computer. And he won’t go to the Christmas party. But… if you put him on it, he’s clearly very bright, so… the sky’s the limit.”
It’s not that a job in IT would be a fate worse than death or something, but rather it was the Christmas party bit that stung. We want Avery to have a full life, engage with other people, have friends, maybe have his own family one day, and experience all the world has to offer. We didn’t want him stuck in his own imagination, struggling to connect or hang onto a job. Or, worse; sometimes ASD kids turn into very disturbed teens, difficult to control, angry, sometimes even violent. The "risk" was one we were willing to take.
If there are any changes, I'll post about it right away. But... one month in? I'm convinced. I'm shouting it from the rooftops. This shit works.